Thursday, April 2, 2009

Sleeping and eating . . . NOT.

I am pretty much at my wits' end with this whole not sleeping and not eating thing.

Finn has not slept decently since January when he got sick with an ear infection and suspected RSV. Before that, he was sleeping 10 - 11 solid hours at night. He's never gone back to anything close to that. He's up and down, up and down all night, every night. I put him down in his bed where he'll sleep for an hour or two and then he starts wailing. If I am able to gather enough energy to sit with him, I do. I sit with him and nurse him and put him back down, and he might sleep for another hour tops. Usually, though, I am too tired to sit up with him and so I just put him in bed with me. But even this does not make him happy. He spends the entire night latching on and pulling off and whining and crying. It seems to be worse when I need to turn over and thereby put him on his left side. Sometimes I have to sit up - straight up, against pillows - with him on my chest, in order to calm him. This is how our nights go. Every single night.

I am convinced at this point that there is something physiological going on that is causing all these sleep problems. Despite the fact that I am not eager to have invasive procedures done to him, when the audiologist at his hearing screening told me that he has fluid in both ears and will likely need tubes placed, I sort of started seeing tubes as our possible salvation. However, the ENT we saw last week said it's a three-month process to determine if he actually needs tubes. He just finished up his antibiotics for the ear/sinus infection the ENT dx'd him with, and he does seem to be feeling much better, but still he won't/can't sleep.

Naps are a different story. He still naps in his swing. And he naps well. I assume it's because he's upright in his swing (and swaddled - yes, at nearly 9 months old, I still swaddle him for naps). Which also tells me that there's some physiological reason that he's not able to sleep well lying down. (And sometimes I do resort to the swing at night just so I can get an uninterrupted 2-hour chunk of sleep if I'm feeling really desperate.)

Somebody suggested to me that maybe he has "silent reflux." I have no idea. I know that he is a very spit-uppy baby - always has been and still is.

Anyway, he has an appt. tomorrow morning with our regular ped to recheck his ears (and what, I ask, is the point of that if it's true what so many people have said, that regular ped's don't have an ear scope thingy small enough for Ds ear canals???), and I really want to try to get to the bottom of his sleep issues, so I'm going to lay it all out for the good doctor and hope he can offer me something - something besides sleep training, because frankly, I just don't think that's the answer right now.

Also, Finn is scheduled for his surgery to have his testes moved down to their proper locations on Monday :( (And I am feeling some anxiety over this.) And all along I've thought that any sleep training would have to wait until after that's all over anyway.

As for eating:

He still doesn't really eat. He liked the avocado the first couple times I gave it to him, but then started refusing it. It seems to go that way with everything I try: banana, yogurt, peas, etc. He goes for it the first time or two and then flatly refuses. Being that he's nearly 9 months old, I'm feeling a great deal of pressure to get this kid eating solids already, and he's just not into it. It involves me pretty much force feeding him with a spoon - and I'm sure that's bad on all kinds of levels. There seems to be a fine line between being persistent and being forceful, and I fear that I'm just turning food into a big ol' turnoff for him. But he doesn't want to eat (and forget self-feeding - totally not happening). And it's not that I'm worried about his growth and weight gain, because I'm not. He's still growing just fine on breastmilk alone. But I think he needs to learn how to eat actual food. So I'm becoming terribly worried about him learning that skill for its own obvious value, and how eating affects speech development.

And I did ask our service coordinator for a consult with an OT so I could get some guidance on these eating issues, but she never got back to me, and with them now trying to reduce services, I assume there's no way I'm going to get anything extra unless it's a truly desperate situation. So I feel stuck.

Ack. So much to worry about.

17 comments:

Following Him said...

For the food issues, the OT will probably be able to help with the feeding issues. For some reason, he could have an oral aversion or sensory issues going on.
As for the sleep. In his crib, have you tired propping his matress up a little so that he is on an incline? I wish I had more advice than that.
~Elyse~

Wendy P said...

We propped Kira's mattress up with a pillow underneath it and that seemed to help her sleep for longer stretches in her crib.

Laurie said...

Hey Lisa,
(((Hugs))) You are doing awesome.
I have NO idea how you are functioning on such little sleep. I dont know what to say, other than trust your instincts on this. Even if they said to wait 3 months or whatever, if you believe that something is wrong, I would push them to fix the problem sooner. Or at least take another look sooner. I know you know that already, tho...
About the food...Dylan is still not self feeding either. In fact, I havent even tried it yet. He is still bfing as well as being fed baby food from those jars. I have been trying YoBaby, but he's not a huge fan yet. I have also introduced a sippy cup and we have had zero luck with that so far. We're just going to keep on plugging away...
Im sorry I cant remember, but has Finn seen a GI specialist yet? Im only asking bc of that "silent reflux" that you mentioned. Dylan has horrible reflux and we are scheduled to see a GI doc on the 23rd.
Ugh, Lisa. I wish I had some great advice for you. Hang in there...it's got to get better.

heather said...

Morgan slept in her swing for most of her first year. None of my other kids liked the swing but she LOVED it. So she slept in it through the night most nights too. We did the pH probe study with her too that showed she had pretty bad reflux too so she took some meds for that too (reglan and zantac). But honestly it didn't slow down the spitting up at all. She spit up everytime she was on her tummy! We stopped the meds when she was sitting up more on her own and getting around better--maybe around 14 mos?

I know this is easier said than done but I honestly wouldn't stress too much about the eating issue. Breastfeeding is going to help him develop the muscles for speech better than anything else will! And he will eat when HE is interested. My oldest wouldn't eat well for me and my ped cautioned me to be careful with forcing it because it quickly becomes a control issue and the child will ALWAYS win! I think he is getting plenty from you and just doesn't care about it right now. As far as self feeding--does he have the pincer grasp yet? It was obvious when Morgan developed that milestone because she always had stuff in her hands and mouth after being on the floor (ok so maybe I should vacuum more often! :) But I think she was closer to 9 mos. when she did that. And I think she started to self feed closer to 15 mos. It's all a blur now but I think he is still quite young to have any desire to do the self feeding quite yet. Good luck! :)

Tausha said...

I am so sorry you are having to deal with all of this and also with very little sleep. Since Sam got sick his sleeping has been terrible and all he wants is to be held. He does eat baby food but isn't even close to feeing him self and we tried the sippy cup once and it was like, no freaking way am I going to do that, so we haven't forced the issue. He does eat baby food but not much, he is really picky but he is gaining weight so I just figure he will eat more when he is ready. My aunt told me about raising his mattress as well so maybe that will help. My sister said her little boy slept in his swing day and night for the first 2 years of his life and he didn't even have a disibility so I wouldn't worry about that. I wish I had better insight or suggestions but you are in my prayers. I think what Heather said is good advice though. I would push for ear tubs, that might solve it all together.

SunflowerMom said...

Hugs, mom! It sounds like you are feeling pretty tired these days!

Often, reflux is an issue that affects many other areas. It causes restless sleep (discomfort from the acid coming up), sinus issues (irratation to the sinuses causing excessive production of mucus) which then causes ear infections due to excess mucus blocking drainage. A kiddo with a tender esphagus is less like to want to eat solids. If he is refusing solids, he probably has a darn good reason for it. Sometimes reflux is also worse when breastfeeding mom consumes milk.

I think that knowing his status on reflux could answer a lot of your concerns. Most kids with Ds do battle reflux the first year or so, using medication to help control it.

You know from reading my blog that Sean has had a lot of problems with eating. I strongly wish I would of followed his lead and looked more into medical reasons for his complications.

You are doing a great job meeting Finn's needs by breastfeeding him and attending to his night time needs. I do not think sleep training is the answer, it sounds like he is waking because he is uncomfortable. You can't "train" him to "get over" his discomfort. Try to keep a positive attitude about food- he does not need it as a meal replacement- your BM is the perfect food for him. Give him the opportunity to explore food, he is still young!

I hope you can get some leads to a specialist and help for Finn.

Lovin Mama said...

((Hugs)) I just wanted to suggest that if its reflux it could be affecting his appetite for solids. Actually, I second everything Sunflower Mom said. Thank goodness he's got the breastmilk until it all gets sorted out. :)

Tricia said...

I am not able to read all the other comments right now,so sorry if I am reiterating what has already been said. I would see about the reflux...maybe just try the reflux med and see if it works...you can always stop it. G has been on zantac since about 4 months. R is back on axid. When we don't use it they both have problems. Propping the crib mattress up...try that. Also...the eating thing...maybe he is just being picky? He does well for a couple days on something and then just refuses, but on the good days, does he eat really well?

I would call you service provider who was supposed to get back to you and see what's up. you prob. have to push her. DOn't wait for her (although I understand the urge to).

Also...I think an OT or speech therapist for just an initial eval at this point could be PRICELESS...maybe even if that means paying out of pocket for a one time thing? Will your health insurance cover any of that? We go to a PT quaterly that we pay for in part because it's nice to get an opinion from someone who is not part of the "system".

I know I am not one to talk b/c G is STILL not doing well with slef-feeding (at least with a spoon anyway)...but if you can nip it in the bud now......

A lot of people said G had texture issues. She definitely did with crunchy things...still does to an extent.

OK i am rambling. Mostly, I say, push the issues...with pedi (for reflux script), with ENT (for ears thing), with the peeps for the eval.

Good luck! You definitely need some sleep, friend!

Tricia said...

And now I just read SUnflower Mom's note and I should have just said ditto! :)

Tricia said...

Oh...and G USED to be on zanac, but is now on prevacid--not that it matters.

Keri said...

My youngest brother had severe GI reflux. To the point where his drool ate holes in the couch. He kept spitting out solids until the ped prescribed him an antacid. He wasn't keen on solids either- until he'd been on meds for a week. Before he was on meds the only way Mum could get him to sleep longer than 90 minutes was to put him in his car seat and put the car seat in the crib.

starrlife said...

Wow all such good ideas- I too often used the car seat in the crib for sleeping- let him sleep wherever he wants,the swing whatever, eventually they all sleep in their own bed! And you need some sleep!I also say what's the hurry with solids?

Alisa said...

Hi Lisa,
First, I really love reading your blogs! I have 3 kids: a 6 year old girl with DS, a 3.5 yr old girl that's, shall we say, "precocious" and a 7 month-old boy. And I don't have it even half as much together as you do! Three is putting me over the edge, so six, well, I just say "wow" every time I read. Regarding Finn's ears, you can find a copy of the DS Health Care Guidelines at the ds-health.com website. They recommend AGGRESSIVELY treating any fluid, etc. So a 3-month wait is probably not needed. Go with your gut! Also on the site, there is an article about reflux which might give you some info. And last, there is a great article at http://www.disabilitysolutions.org/newsletters/volume3.html that talks about introducing food textures for kids with DS that you might find helpful.
Good luck.

Karly said...

Just wanted to send you some hugs. I have always heard BFing is one of the best things you can do for developing muscles for speech. You are doing a great job. I think I would definitely push the issue of tubes in your position. Doesn't matter if he is getting infections, just having the fluid sitting there could be an issue with hearing/pressure, etc. Hope you guys get some answers...and some rest!

Jocelyn said...

Hi Lisa, I read your blog but don't think I've ever commented. So sorry to hear about your lack of sleep, ahhh! I'm sure others have already said this, but I didn't have time to read all the comments, so, here goes. Myles is 8 months and is not really getting any foods other than breastmilk. We tried at 6 months, but it was super unsuccessful, so we did a feeding evaluation and learned that 1. he was having silent reflux and it pained him to swallow, and 2. his "motor plan" is so uncoordinated that he was unable to effectively move food from front to back and back down. We backed off the feeding, started reflux meds (prevacid, which seems to be helping) and went to an in between exercise where once a day we use syringes to put oatmeal in the back of his mouth between his gum and cheek while feeding him a bottle to help him learn to swallow. We'll move to spoon feeding again after he is able to successfully swallow food this way. Does Finn look like he is in pain while eating? Myles was the same way where he would like a food the first time or two (bananas, squash, peas, avocado, apples) but then the next time would just push it all out of his mouth. I hope what we're doing now is helping, because like you, I really want him to be eating solids soon. Good luck! Oh, and we go to the ENT next month, I've convinced myself Myles has fluid in his ears. Blah.

Varsha said...

I am so sorry that you haven't been able to get a good night's sleep...I know it can take a toll on you....hang in there!! As for the OT issue, just wanted to let you know that when Alisha had feeding issues, we saw Mary Hallway at the Children's Therapy Center in Garden Grove. She is AMAZING!!! And all the OTs she trains under her are equally as good. You really should see if you can get an eval through your private insurance (if Reg Ctr is not working out)...the sooner you start the process, the better for you and for Finn.

Also, I second the suggestion to see a GI doctor (there are only a handful of ped GIs in OC...some are great, others not so great...email me when you're making an appt and I can give you my two cents!!!). If Finn does have reflux, then it probably makes him feel crappy all the time...maybe he needs a med to help ease the discomfort and/or burning sensation that reflux can cause.

I really hope you can figure out what's going on so that both of you can get some much needed rest.

Loren Stow said...

I think you're doing a great job! Functioning on such little sleep is really really hard!
I would agree fully that there is something going on that is affecting his sleep (especially if he was sleeping through before!), and it is not a case of sleep training. I know that Malakai has bad reflux, which is made worse when he lies horizontally - so maybe some medication to help with that could make a difference?
I don't have much else to offer - and the previous replies have given such great ideas!
Hang in there - I hope that everything comes right real soon!